Students, About that Walkout: Totally Do It.

Hi Students,

Thanks for taking the time to read this.  I wanted to take a minute to talk to you about the walkout scheduled for March 14th (or April 20th, depending on where you are in the country.)  I am a history teacher and mom of two girls and I’m one of many adults that will tell you to totally do it.

The walk out has to do with protesting gun violence in schools.  It’s completely fitting that you, the students, would want to do this.  After all, you’re the ones who go to school every day, the ones who have to deal with this fear, the ones who have to go through the drills and the what ifs.  What if an armed intruder comes into the school. What do you call it?  An active shooter? A code red?  Whatever you call it, or your school calls it, it’s totally wrong that it’s something you have to worry about.  You should be worrying about what college you want to go to, who you want to go to the school dance with, whether or not you want to try out for the school play.  You should not have to worry about whether or not there’s a student with a gun who’s going to shoot you in school.

This is your chance to use your bodies in a political movement. The truth of the matter is that money moves politics, and the lobbyists have all the money.   There aren’t a lot of political options open to non-voters, but one of them is peaceful protest.  It’s a protection in the First Amendment, along with freedom of speech, freedom of the press, and freedom of religion.  Freedom to peaceably assemble is right there too.  It’s your right,all of our rights as American Citizens.  Thomas Jefferson called them “unalienable rights” along with Life, Liberty, and the Pursuit of Happiness.   I’d say that not getting killed by a gun in school qualifies toward Life, Liberty, and the Pursuit of Happiness, wouldn’t you?

There are a bunch of letters out there from other teachers who are encouraging you to have a Walk Up rather than a Walk Out.  The idea is that rather than using your bodies to politically protest, you use your bodies to sit down next to the lonely kid next to you, you share a sandwich, you be a nice kid.  And I want to tell you, that’s great, but you can totally do that 179 other days of the year.  In fact, sit down the day before the walk out next to the lonely kid, share your sandwich, and invite them to the Walk Out with you.

Because here’s the thing.  This is ONE DAY.  The walk out is a movement.  It’s a way to organize.  It’s a way to be powerful both individually and part of a group.  It’s being educated about a subject, and making a decision to do something about it, at the same time as everyone else.  It’s a national movement of all teenagers who have said, “Enough.  Enough of being afraid.  Enough of choosing the right of gun owners over the lives of kids.”  And doing it all together, all at the same time, gives it more power.  So Walk Out Proudly.

You might be getting pressure by principals and teachers to not participate in the Walk Out.  They might be threatening you with disciplinary action, detention or suspension, or whatever.  Keep in mind, these are the same people who celebrate people who hid Jews during the Holocaust, who teach you about Martin Luther King, and sitting at lunch counters in Woolworth, or about suffragettes marching for Women’s right to vote.  Here’s the thing.  All of those people whom  you read about and celebrate, they were acting against the law because it was the right thing to do.  It’s called Civil Disobedience.  Why are your principals and teachers against this idea of  your civil disobedience, but celebrate the civil disobedience of historical figures?  Well, let’s just say that democracy is messy and complicated, and it’s hard for your principal and other school leaders to see the light at the end of the tunnel. Their job is to protect you and to make sure that there is order and discipline.  They’re seeing the potential risks to having a bunch of kids walk out, not the potential greatness.

So here’s what you do.  You educate yourself on why you are walking out.  You organize with your friends.  You stay respectful to the adults in your life, while staying true to yourself.  Remember, this is only 17 minutes, from 10 am to 10:17 am, after that you go back in the school and go back to work taking notes and raising your hand, eating in the cafeteria and running track.

Here’s the other thing you do.  You bring your phone.  You take lots of pictures and videos.  And you post them on all of your social media accounts.  You make this go around the world again and again and again.  You show your power as soon-to-be-voters and internet savvy consumers.

And then you do one other thing.  You write to your Members of Congress.  You write to the President.  Maybe you even send them a picture.  You say that you’re a student who Walked Out and you tell them why you walked out.  And you tell them that you’re not going away.  And that they will be voted out if they don’t change the gun laws to protect kids in schools.  Governing is just a plan for the future. If you don’t like the way your representatives are running the government, you can vote them out in favor of someone that has a better plan .  You have the power, or you will very soon.

One more thing.  I want to tell you how proud I am that you’re taking a stand and making yourself visible.  You are going to be the leaders of the world, and I’m glad to see that you’re doing it with thought and responsibility.  That’s what this country needs more of, young people who speak truth to power.  Speak your truth.

Please share this with your friends, and let me know how it goes.  I can’t wait to watch this unfold. You are Brave Fragile Warriors. Be safe and have fun.




Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

  •  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
  • Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
  • Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
  • Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
  • Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
  • Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
  • Interview key new staff members who will interact with families, like nurse managers, etc.
  • Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.




We Cannot Stay Silent

I’m the mother of two daughters, one of whom is chronically ill. I’m also a historian, and I teach classes at a small college in the Boston area.  This semester I’m teaching a course on Women in American History, where I have twenty-five women as students.

Well, I had twenty-five last week, this week I have twenty-four.

One of my students was killed last weekend by her boyfriend.

She was stabbed over twenty times in her torso, more than half of those in the back.  Her boyfriend had suffered from some sort of psychotic break, had checked himself out of the mental health facility where he was being treated, and less than 48 hours later stabbed my student to death.

It is still fairly early in the semester and I didn’t know her that well. She was beautiful and inquisitive and earnest with her answers during class discussion.  Her papers were well written.  Her last paper, a critique on Linda Kerber’s Women of the Republic, a book about women during and directly after the Revolutionary War, talked about how women took incremental steps to be increasingly active in the public sphere, to be accepted in political life, to be able to enter into legal contracts.  They slowly strove to be perceived as equals.

They still are.

According to the National Coalition against Domestic Violence, 1 in 7 men have been victims of severe domestic violence in their lifetime, while the number of women who have experienced severe domestic violence is 1 in 4.  Twenty five percent of women have experienced severe physical domestic violence in their life time.  That’s hardly equal.

Additionally, 72% of all murder-suicides involve an intimate partner; 94% of the victims of these murder suicides are female.

It’s too many, it blows the mind.

I’m reminded that it can happen to anyone, that the Rob Porter scandal proves this.  He was violent not with one women, but with both of his ex-wives, and the White House has known about it and has kept him on as a staff member until pictures were released where one of his ex-wives had a black eye from his fist.  I’m reminded of the Ray Rice episode where the NFL knew he had been charged with domestic assault but didn’t do much about it until the video was released to the public showing him knocking his wife out cold in an elevator and then dragging her body into the hotel lobby.  These men were protected by silence, and their wives were punished by the Exact. Same. Silence.

As a historian, I started recording oral  histories of women who attended the 2017 Women’s March on Washington, interviewing women from across the country.  Many women said the reason they attended was because they had been sexually or physically assaulted, and having a man who bragged about sexual assault and then called it “locker room talk,” hit them at a visceral level.  And I can’t help but determine that the #MeToo movement has everything to do with the Women’s March, it was the genesis.  But it also goes to show that even from my student’s words, even from the Revolutionary War, women strive to be seen and to be protected equally under the law.

Women are now exhausted and angry.  I am exhausted and angry.

My daughters saw me upset as I picked them up from school and I had to tell them why.  A student of mine had been murdered.  I had to go to class the next day and talk to my students in that class, some of whom shared their own encounters with domestic violence. I shared the news story on facebook, and along with multiple messages of support, I got more messages from friends who had survived domestic abuse and I never knew it.

And yesterday morning I talked to my fourteen year daughter old about domestic violence. I told her it’s never ok for a boy to touch  you in ways that you don’t want to be touched, in a sexual way or in a physical way.  It’s never ok for a man to hit you.  Never .  Never.  That her father and I will always support her, no matter what, no  matter how old she is, that she can always come home.  That this is important, remember it.  And I hope she will.  And I’ll tell her younger sister when she gets a little older.  And I’ll tell them again as time goes on.  It’s never OK.

I debated whether or not to write this blog post, and put it on this site, a site for caring for chronically ill kids.  But it’s important.  We need to talk about it.  We owe it to the women who have suffered domestic violence.  To those who lost their lives.  To those who currently live in fear.

Our silence protects the abuser and punishes the abused.  We cannot stay silent.

Good Night Lights!

There has been a growing movement to bring cheer to sick kids at hospitals.  Not just during the Christmas season, but all year round.

It’s called Good Night Lights.

Picture this.  At 8:30 every night, the city stops and blinks its lights for a minute to say goodnight to the sick kids in childrens’ hospitals. The kids are given flash lights to blink back.  Restaurants and boats participate.  Skyscrapers and police cruisers.  They all blink their lights for a minute to say goodnight.

A few months ago I shared with you the story of the University of Iowa Hawkeyes, how between the 1st and second quarter of their football game, the fans all stand and turn around and wave to the kids in the UI Children’s Hospital.  It’s amazing.  You would think a small thing like that wouldn’t be such a big deal, but the kids LOVE IT.  Their parents LOVE it. Even the staff LOVES it.  Why you may ask?  Hospitals aren’t great places for kids.  They are there because they are sick and sore.  There is very little to look forward to.  This is something special.

That’s just during football season, though.  How many games?  Eight?

Imagine having one thing to look forward to every night, a way to cap off the day and welcome the evening?  And it’s super easy.

I first heard about Providence, Rhode Island, and their Good Night Lights Program on the radio, and I looked it up. Boats and hotels and even restaurants blink their lights to the kids that are sick at the Hasbro Children’s Hospital. You can read about it here.

It has become so popular that it has spread to Orlando, where the city blinks its lights to the Arnold Palmer Children’s hospital.  You can read about that too, right here.

It’s also a thing at Beaumont Children’s Hospital in Detroit.

I want to do this for Boston!

But Boston has specific problems that need to be overcome.  It has a number of childrens’ hospitals.  There’s Tuft’s Floating Hospital.  There’s Mass General Hospital for Children and there’s Boston Children’s Hospital.

pediatric hospitals boston map

How do we triangulate efforts to make this work?

How spectacular would this be if we COULD make this work?

Let’s brainstorm this.

Please leave me a message if you have ideas!



The Gift of Life: Could You Do It?

This Thursday, February 1st,  is the day that we celebrate as Wendy’s Kidneyversary, the anniversary of her kidney transplant, a day that changed all of our lives forever.  But we got the call about the kidney and she went into the operating room the day before, January 31st. That’s the date on all of the records. She just  didn’t come out of the operating room until early morning, February 1st.

So why do we celebrate on the next day?

Let me explain.

I can’t celebrate a day that another mother lost her child.  I just can’t do it.  Her child’s death helped my child’s life, and that is a wonderful, wonderful thing.  But I can’t celebrate on that day.  I give that day to the mother of the child, the fourteen year old boy, to mourn.  That is the worst day of her life.

And I cry with her.  I mourn.  I’m crying now as I write this. Imagine, just *imagine* losing your child.  The baby you held.  The boo boos you bandaged.  The first grade Pilgrim plays and the fifth grade choir.  Eighth grade with awkwardness and anger and smelly clothes. Even the bad days, wouldn’t you take them, than the alternative?  Wouldn’t you?

Imagine hearing that your child has died and being approached, delicately, by the doctors about donating his organs.  All the lives that could be saved.  Could you do it?

Could you?

This is Wendy’s 9th year with her kidney.  She has done inspiring things. Her life is a testament to organ donation.  In years past, I have written letters to the mother of Wendy’s kidney donor, and I have written about all of the things that this kidney has done, all of the countries it’s gone to and all of the things it has helped Wendy to do to succeed.

This year, though, I’m asking you, the person reading this, to become an organ donor, if you aren’t one already.  It takes a minute. The link is here.

Don’t make your loved ones have to make that decision, of organ donation, on their worst day.

Make the decision for them.  Give the gift of life.

And please help me to celebrate on February 1st.  Nine years!

Thank you!




A Short Story About Germs.

Once upon a time there was a little girl who started at a brand new school in a brand new state and she had lots of health problems. She had so many health problems that the principal and school nurse wrote a letter home to parents of the other children telling them that if they sent their children to school while they were still contagious, that they would likely put that little girl in the hospital.

On Back to School Night, as the parents came into the cafeteria to hear the announcements before going to meet their child’s teachers, the school nurse again stated that there was a child in the school who was immune suppressed. She took medications that made her more susceptible to childhood germs. She got sick faster and harder, and if she had a stomach flu or a temperature of 101 or higher, she instantly had to go into the hospital for three days.

The parents were concerned. You could hear a pin drop in that auditorium, where the parents sat on tiny chairs, listening and thinking. It was something to consider. How sick was sick enough to send to school? When do they keep their child home?

The nurse explained. “Your child needs to be fever, diarrhea and vomit free for a full 24 hours before you can send your child back to school.” She continued, “If you have any questions either err on the side of caution, or call me and ask.”

The child’s mother was also sitting in the audience, silently wondering how all of this information would affect her child. Would it change the way parents would approach play dates? Would her child be judged and ostracized? At least, for now, her child was anonymous. No one knew who the very sick child was.

That changed in the next five minutes. The parents were released to the hallways, to look at the freshly decorated bulletin boards and the highly waxed floors. They they found their proper classrooms and sat at the too-small desks in too-small chairs, waiting for the new teachers to introduce themselves.

The teacher began by saying that her class was the class with the very sick child and the very sick child had a name, and it was Wendy.

Wendy’s mom gasped.

The other parents nodded, thinking. Wendy’s mom tried not to look around. She couldn’t believe that her daughter had been exposed. She wondered if it was illegal.

But the next day, Wendy had her first play date.

Wendy’s mom was cautiously optimistic. Maybe, just maybe, this was going to be ok.

Parents really took back to school night to heart. They were very careful about sending their child to school if he or she was sick. They would take extra care to call the school nurse with symptoms to see if they should send their child into school. When in doubt, they kept their child home.

And the most amazing thing happened. Not only did Wendy stay healthy, but the other kids in the third grade class did too. While other classes were hit hard with stomach viruses and influenza and strep throat Wendy’s class was an oasis. And Wendy only went into the hospital once that year. Amazing.

What is the lesson? The school health care rules to keep kids safe, to stop the spread of germs, is good for all kids. But it is especially important for kids with compromised immunity. Those are kids who can’t protect themselves so they have to rely on good luck and dedication. Scientists call this herd immunity.

Thomas Jefferson once said that Eternal vigilance is the cost of freedom. For kids with compromised immunity, that freedom is from the hospital. That vigilance is from the community.

This story has a happy ending. If you have a child in school, you can be the hero of the story too. Keep your child home if they are sick. Save other children from becoming sick. Keep a immuno compromised kid out of the hospital.

It’s not a fairy tale, it’s science.

Baby, you’re growing up.

Dear Wendy,

You’re about to turn fourteen, and I can’t believe it.  Sometimes it feels like you’ve lived two lifetimes in that body of yours.  You have always given us a run for our money.  You were born on the coldest day of the year in 2004, the Obstetrician was a doctor I had literally met once before.  My doctor was sitting shiva, so I went with the new guy.

Like all births, it didn’t go as planned, but it was a relatively easy delivery as deliveries go, and you popped out healthy and perfect. Ten fingers, ten toes, and a loud strong voice.  Your dad and I were thrilled and exhausted, and we went home as a family a few days later.

But something was up, you weren’t a strong eater and you didn’t nurse well.  I also didn’t know what I was doing, and the long story short, I called the pediatrician and said, “I know we’re not supposed to come in until Monday but I think something is wrong.”  Turns out, I had developed mother’s intuition.  You went back into the hospital for a week, as a “failure to thrive” baby.  Nothing was wrong necessarily, they kept you to put some weight on you after a lumbar puncture and sent us home again with a prescription for some drug to help me get my milk back, and a strong suggestion to supplement with formula.

You’ve never been easy.  As a toddler you were willful and headstrong, testing the boundaries of everything all the time.  You had so much energy that we called you an “Energy Vampire” because you only seemed to get stronger as we flagged at the end of a long day.  You have been, and continue to be, my greatest challenge as a mom.

But as birthdays go, you’ve had some good ones and some bad ones.

On your first birthday, you received your bear Teddy, the companion through all of your hospital stays, which is good, because you’ve had over 200 of them.  I have washed and mended Teddy more times than I can count, but I am grateful that you have him.

On your fourth birthday, you were in the hospital.  You had to be readmitted because you were on too many oral medications and your stomach couldn’t handle them all.  You were super weak and we asked all our friends to wear green and send us pictures because green was your favorite color.  The hospital staff adopted a penguin at the New England Aquarium in your name, so you could go and visit him once you got well enough.  You named your adopted penguin Poppy, and you had a plush animal that looked like him.  Your cake had yellow roses on it, and no candles because candles aren’t allowed in the hospital, so I ran down to the gift shop and got colorful plastic frogs to decorate all over the cake.  You celebrated with a little girl who had a brain tumor from Canada.  We eventually, a few months later, got to go to the aquarium to see the penguin.

On your fifth birthday, we were waiting every moment for word that your kidney was going to arrive.  You wanted a pool party, in the middle of January, so we arranged to have your party at the pool at Vermont Technical College. Your friends came and we had pizza and cake and played musical chairs, besides the swimming of course!  You were super sick but you loved that birthday, just being a normal kid with your friends.  Except you were on 14 medications that you took in 2 hour increments around the clock.  Your kidney (whom you call Frank) arrived 22 days later.  He was a little late to the party.

On your eighth birthday, you wanted to have a Fairy Princess Tea party, so we rented out the Three Bean Cafe on a Sunday (they were normally closed) and everyone got wings and tiaras, while you drank “tea” and ate cake.  Even the barista Rex wore a crown to celebrate the day.

You missed your tenth birthday, which was going to be going to an indoor waterpark, but you had pneumonia and had to go into the hospital.  They let you out pretty quickly because everyone in the hospital had the flu, but you were there for a few days under observation.

For your 11th birthday you wanted to go ice skating with friends and then for a fondue dinner, which we miraculously pulled off with no problems.  It was freezing cold, but you had a good time, and I think it might have been one of your best birthdays.

Now here you are at 14, almost as tall as me, hair dyed purple, playing your ukulele all around the house.  Life has not been easy for you, but you have been a vibrant presence in the lives of others for as long as I can remember.  You are a good big sister.  During the last snowstorm, while I was taking a shower, your sister came in from playing in the snow and you made her hot chocolate, just like that.  You are fantastic with little kids, collecting them like the Pied Piper wherever you go.  You’ve recently gotten your first job teaching soccer to toddlers, who adore you.  You are a good team mate and a good friend, being attentive to them and being a good player on and off the field.  You’re a good daughter, too, even though we sometimes butt heads, but all moms and daughters do. I just want you to know that I’m so proud of the young lady you’ve become.

Tonight is a good example.  You went to yoga with your friends, and got a ride home.  You realized that you forgot your glucometer at the place which was locked up tight. You told your dad, which I’m sure was not easy on you, and you went all the way back together to get it.  Then, you went to swim practice, even though you were going to be late.  That takes heart, kid, and you’ve got a huge one.  I have checked your blood sugar in twelve different countries, on boats, trains, in cars and planes.  I’ve changed your pod in Italian churches and at soccer games.  I’ve given  you back up injections at Swim meets and on mountain tops.  And you just go with it, you roll with the punches.  You’re the most resilient person I know.

I can’t wait to see how you grow up and use your talents as you become an adult.  You have such a vibrance that’s impossible to miss.  Last summer, when we did StoryCorps, I told you that you reminded me of Harry Potter, because the worst part of his life, losing his parents and getting his scar, happend in the beginning of the story and there was so much more that he did, and that happened to him and as a result of his ations.  I still feel like your illness as a three year old was only the beginnning of your story.  I can’t wait to be a part of the rest of it.

Happy Birthday, Wendy.  I love you.

Last Minute Wishes

Sometimes the season gets us down. There’s a lot of expectations to make the holidays picture perfect, and a lot of times we just can’t live up to all of that, any of us.  And as the end of the year winds down, it’s nice to take stock of the year, see what our successes are, and where we were found wanting.

Brave Fragile Warriors did not have as many posts as last year, my attention was divided and I just didn’t write as much. The first year, I was determined to write once a week, but I realized not many people want to read a once-a-week-post, so I wrote instead when the spirit moved me.  Hopefully that means that my posts were richer and more meaningful.  Hey, a girl can hope, right?  When I look at the analytics, it was viewed in 70 countries around the world.  That’s pretty cool.    I was also contacted to reprint my posts in Today’s Kids In Motion, and The World Transplant Games asked if they could put my blog post in their newsletter (note:  the link is to a PDF).  Probably the biggest part was that one of the blog posts is now in the chapter of a book, The Power of Moments, by the Heath Brothers.  These are huge honors and I feel really lucky that these stories are getting out there.

I did a lot more public speaking this year than I ever expected to (outside of my classroom, of course.)  Topics ranged from the importance of telling your story, to helping to minimize anxiety in an Emergency Room Setting, to creating partnerships within the hospital between patients and providers, and what it looks like to be the parent of a sick kid.  All of these topics are near and dear to my heart, but honestly, public speaking is not my favorite thing in the world.

I also spent a lot of time, both on the blog and in person, advocating for the health care of children.  It’s so important to speak up for kids who are sick, and for their parents who are in crisis.  For the first time ever, I wrote to my congressional representatives, and I even traveled to their offices to speak to their staffers.  I wrote a letter for STAT news that was published about the necessity of the Affordable Care Act for kids like my Wendy.  I worry about funding for CHIP that will only last through March, and I will keep fighting for funding for those kids as well.

I got to do one of my favorite things the other day, which was wrap presents for parents who have kids in the hospital for Christmas.  There are a number of charities that buy presents throughout the year and bring them all in to Massachusetts General Hospital so parents can “shop” for their sick kids and then we get to wrap the presents for them.  In fact, Brave Fragile Warriors was inspired because of this event a few years ago.  I love it because it’s easy, right?  I go in and wrap presents.  But the parents, who have had their kids in the hospital for who knows how long and who are in total crisis mode, are so grateful. It’s one less thing to worry about.  There were two sets of twins at the hospital, each with older siblings at home. One mom had a pile of knit hats, that she added along with her toys for her son who was going through chemotherapy and had lost his hair.  One mom separated her gifts for each child so that she had something to give to each of them. One mom was telling me that the Christmas Tree was still tied to the top of the car since last week because they had to go straight to the Emergency Room and hadn’t left the hospital since.  Think about that for a minute.  It made all of my crises seem rather small in comparison to twins in the hospital and a tree still tied to a car.

It’s too late for a lot of us to help kids and their families in crisis right now, this year, in person.  But I would suggest finding a charity to donate to, for kids, and you’ll feel better, even if your holiday isn’t going so well right now.  If you don’t have a favorite children’s charity, then I would suggest the Make A Wish Foundation.  They give kids with life threatening illnesses the chance to make one wish.  Whether it is to meet a personal hero, or to take a special trip, or to have a certain event.  When Wendy had her Make A Wish, she chose to go on a Disney Cruise, and I can honestly say, it was one of our first steps toward healing and feeling like a family again.  Other kids choose to swim with dolphins, or to be Batman for a day.  You get the idea.  For Wendy it was a big boat with a pool and water slide, and Mickey too.

Happy Holidays to you and yours.  Celebrate the season together.  Make good resolutions.  Rediscover gratitude.  Lend a helping hand to those who need it.

These are my last minute wishes for you.


Seasons Greetings from the Island of Misfit Toys

I’m going to tell you a secret.  The holidays can be incredibly stressful for  a parent of a chronically or terminally ill child.

It’s because a lot of times we feel like residents on the Island of Misfit Toys.  You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly.  They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.

How do we feel different?

It’s the Christmas Cards, for a start.  The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments.  Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things.  But our child’s milestones might be different.  Our accomplishments, though amazing for us, seem delayed to some.  We don’t know exactly what to write about, what to share.  We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas.  We don’t want to bring you down with us, but for some of us, this is a reality.

Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that  it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas.  That’s the reality.

I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal.  For me, here is a small example. Wendy takes medication three times a day (besides her insulin.)  We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.

Except on Christmas.

For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up.  We usually realize around 10 am that we’ve forgotten.  There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines.  Parents who have to do PT on their kids’ chests.  Medical care happens even on the holidays. Parents are vigilant even on the holidays.

We love our kids.  We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that.  Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.

If you’re really interested, ask more questions.

In the meantime, enjoy your holiday, and your family, and the season.

Happy Holidays.

“Wonder”: Review by a Mom of a Sick Kid.

The movie “Wonder” is the story of a young boy, Auggie, who has a facial deformity.  He has been in an out of the hospital for his entire life. The whole family revolves around his care, and everything else gets put on hold:  Mom’s academic career, sister’s attention, and poor dad doesn’t even get a chapter devoted to him.  Auggie, however, has the hardest time, he knows that he looks different from other kids, and now he has to face the horror of going to school for the first time, in *gasp* middle school.  Now, let’s just say it here and now, middle school is tough for everyone involved, but to start at a school for the first time with a noticeable difference, well, that makes it all the harder.

I admit, I cried for at least 75% of the movie “Wonder.” (Wendy cried for the whole movie.)  And why not, there were moments that I could relate to, because at some point in her childhood, my beautiful teenage daughter looked different from other kids, but she was too young to notice.

Because of Wendy’s incredibly high blood pressure, she was taking five different  blood pressure medications.  One of them, minoxidil, is a vasodilator; it expands the blood vessels, which lowers the blood pressure.  You might have heard of the drug, minoxidil, it’s the main drug in Rogaine.  It’s side effect is that you grow extra hair, hair that is darker and more coarse.  For Wendy, she went from a blond to a brunette in just a few months, and her hair grew so quickly that I needed to get her hair cut every three weeks.

Wendy had other things going on, a patch that she wore just below her collar bone for another drug that helped control her blood pressure, and the hair wasn’t just on her head, it was all over:  arms, legs, forehead, back.  She looked….well….different.   Obviously, different.

Wendy was only four, and being the vibrant child that she was, she didn’t notice. We still went to museums and the park, and walked to the hospital twice a week for blood work.  She still swam in the public pool and played in the splash parks. She had an easy smile and a friendly, outgoing personality with other kids.

But the other moms, well, they looked a little nervous around my child.  And the kids, well, they would ask what was wrong with Wendy, why she looked like that.  Thank God, Wendy never noticed.  I would explain that Wendy has an illness and she takes a special medicine to make her feel better, but the medicine makes her grow extra hair.  That satisfied the other kids, maybe not so much the other moms.

Then there were the times where people who knew Wendy didn’t recognize her because she had gone from a blond to a brunette, because she had the puffy cheeks due to her kidney failure, because she had the patch below her collar bone.  Those people would see me and ask where Wendy was, and then visibly startle when I pointed to the child next to me.  Those are the ones Wendy noticed.

There was a woman who cut Wendy’s hair, every three weeks, at Supercuts. We would arrive, and the other beauticians were visibly concerned over how to cut Wendy’s hair, and this woman would just scoop her up, ask about her day, give her two lollipops, and say, “See you in three weeks.” I loved that woman, because she didn’t make a big deal about Wendy.  Wendy was just another kid to that woman.

I cried because I could relate to some, but not all, of the feelings that the mother, played by Julia Roberts, was going through.  Yep, my life had been put on hold.  Yep, my life revolved around Wendy’s care.  Yep, I still worry that Penny doesn’t get enough attention.  Yep, I worry about every new step forward that Wendy has to take ( like going to Washington DC this spring with her 8th grade class for a week without me.  I think I might die.)

But the truth is, that most of us, thankfully, are not Auggie, and we are not Auggie’s mom.  Most of us aren’t Auggie’s sister, or dad.

Most of us are Auggie’s friend, Jack Will.

Jack knows that Auggie is different, and doesn’t know what to do about it.  He’s nice to Auggie because he has been asked to be, and because he is a scholarship student, he’s feeling like he really has to do it.  But he learns that Auggie is sweet and kind and funny and smart, and they really become friends.  But Jack still knows that Auggie looks different. Jack says the wrong thing on Halloween, about his appearance, hurting Augie’s feelings and having to make amends.  Spoiler alert:  it turns out to be ok. Jack Will realizes his mistake when Auggie starts to avoid him.

Jack was my favorite in the book, and he was my favorite in the movie because while Auggie’s family doesn’t have much choice, they need to be supportive of Auggie.  Jack does have a choice, and he chooses to be kind.  Which is the point of the story.

The author, R.J. Palacio, wrote the book Wonder because of a real life experience.  Her young son burst out crying, seeing the face of a young boy with a facial deformity at an ice cream shop.  She was so mortified, because her child wasn’t emotionally prepared to be kind to this young boy, and she went home and wrote the book, from multiple perspectives.  Each perspective in the book speaks from one of the characters (except the Dad, which gets me angry).  Each perspective shows that living life with a loved one who is ill isn’t easy, but you make room for kindness. Bad days will happen, but you move forward, together.

Auggie’s presence changed the tenor of the school, because he was kind as well.  And the other students became protective of him when they saw how the outside world viewed him because they didn’t know him.  You would be tempted to say that the moral of “Wonder” is don’t judge a book by it’s cover, but you would only be half right.

The other half of the moral is it’s ok to be afraid and kind at the same time.

That’s the lesson we want to teach our kids.